Better End of Life Project
Aims
To understand the outcomes and experiences of people affected by death, dying, and bereavement in the UK by generating, retrieving, and synthesising evidence, and to frame this evidence in a format that compels policy-makers to take action.
Methods
This project has three workstreams which include, a cross-sectional survey of bereaved relatives and carers in the UK, mapping available care and services to identify inequalities and gaps and analysis of routinely collected data.
Effective start/end date: 01/01/2021 - 31/12/2023
Workstream 1: We want to know what is the quality of care and support experienced by individuals affected by death, dying and bereavement in the UK? We will generate new data through a large survey of bereaved relatives and carers. We want to understand patients’ symptoms and concerns in the last weeks of life, including pain, breathlessness, and anxiety. We will also explore carers’ grief intensity.
Workstream 2: We want to know what care and services are available, and which are most effective? We will map the availability of care and services to identify gaps and inequalities. We will review and summarise evidence to identify the most effective ways to deliver services.
Workstream 3: We will measure the quality of death, dying, and bereavement care, using metrics developed nationally, to understand the quality of care for populations, and understand differences between regions.
Publications
Chambers RL, Pask S, Higginson IJ, Barclay S, Murtagh FE & Sleeman KE. (2022). Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis. AMRC Open Research, 4(19), 19. Inclusion of palliative and end of life care... | AMRC Open Research
Findings from the Fairer Care at Home report were included in an article written by Michael Simmons for The Spectator entitled "As the NHS shut down, the wealthy chose to die at home". https://www.spectator.co.uk/article/as-the-nhs-shut-down-the-wealthy-chose-to-die-at-home
Sleeman KE, Leniz J, Davies JM, Bone AE, Pask S, Chambers RL, Kumar R, Fraser LK, Hocaoglu MB, Oluyase AO, Barclay S, Murtagh FEM & Higginson IJ (King’s College London, Cicely Saunders Institute; Hull York Medical School at the University of Hull; and University of Cambridge, UK). Better End of Life 2022. Fairer Care at Home. The Covid-19 pandemic: a stress test for palliative and end of life care. Research report. London (UK): Marie Curie. 14 July 2022. https://www.mariecurie.org.uk/globalassets/media/documents/research/publications/beol-2022/h903a-beol-england.pdf
Sleeman, K. E., Cripps, R. L., Murtagh, F. E., Oluyase, A. O., Hocaoglu, M. B., Maddocks, M., Walshe, C., Preston, N., Dunleavy, L., Bradshaw, A., Bajwah, S., Higginson, I. J. & Fraser, L. K. (2021). Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall). Journal of Palliative Medicine. https://www.liebertpub.com/doi/10.1089/jpm.2021.0315
Sleeman, K.E., Murtagh, F.E.M., Kumar, R., O’Donnell, S., Cripps, R.L., Bone, A., McAleese, J., Lovick, R., Barclay, S. & Higginson, I.J. (King’s College London, Cicely Saunders Institute; Hull York Medical School, University of Hull; and University of Cambridge, UK). Better End of Life 2021. Dying, death and bereavement during Covid-19. Research report. London (UK): Marie Curie. 2021 April. https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/2021/better-end-of-life-research-report.pdf
O’Donnell, S.B., Bone, A.E., Finucane, A.M., McAleese, J., Higginson, I.J., Barclay, S., Sleeman K.E. & Murtagh, F.E.M. (2021). Changes in mortality patterns and place of death during the COVID-19 pandemic: a descriptive analysis of mortality data across four nations. Palliative medicine 35 (10), 1975-1984. https://journals.sagepub.com/doi/pdf/10.1177/02692163211040981
Effective start/end date: 01/01/2021 - 31/12/2023
Workstream 1: We want to know what is the quality of care and support experienced by individuals affected by death, dying and bereavement in the UK? We will generate new data through a large survey of bereaved relatives and carers. We want to understand patients’ symptoms and concerns in the last weeks of life, including pain, breathlessness, and anxiety. We will also explore carers’ grief intensity.
Workstream 2: We want to know what care and services are available, and which are most effective? We will map the availability of care and services to identify gaps and inequalities. We will review and summarise evidence to identify the most effective ways to deliver services.
Workstream 3: We will measure the quality of death, dying, and bereavement care, using metrics developed nationally, to understand the quality of care for populations, and understand differences between regions.
Publications
Chambers RL, Pask S, Higginson IJ, Barclay S, Murtagh FE & Sleeman KE. (2022). Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis. AMRC Open Research, 4(19), 19. Inclusion of palliative and end of life care... | AMRC Open Research
Findings from the Fairer Care at Home report were included in an article written by Michael Simmons for The Spectator entitled "As the NHS shut down, the wealthy chose to die at home". https://www.spectator.co.uk/article/as-the-nhs-shut-down-the-wealthy-chose-to-die-at-home
Sleeman KE, Leniz J, Davies JM, Bone AE, Pask S, Chambers RL, Kumar R, Fraser LK, Hocaoglu MB, Oluyase AO, Barclay S, Murtagh FEM & Higginson IJ (King’s College London, Cicely Saunders Institute; Hull York Medical School at the University of Hull; and University of Cambridge, UK). Better End of Life 2022. Fairer Care at Home. The Covid-19 pandemic: a stress test for palliative and end of life care. Research report. London (UK): Marie Curie. 14 July 2022. https://www.mariecurie.org.uk/globalassets/media/documents/research/publications/beol-2022/h903a-beol-england.pdf
Sleeman, K. E., Cripps, R. L., Murtagh, F. E., Oluyase, A. O., Hocaoglu, M. B., Maddocks, M., Walshe, C., Preston, N., Dunleavy, L., Bradshaw, A., Bajwah, S., Higginson, I. J. & Fraser, L. K. (2021). Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall). Journal of Palliative Medicine. https://www.liebertpub.com/doi/10.1089/jpm.2021.0315
Sleeman, K.E., Murtagh, F.E.M., Kumar, R., O’Donnell, S., Cripps, R.L., Bone, A., McAleese, J., Lovick, R., Barclay, S. & Higginson, I.J. (King’s College London, Cicely Saunders Institute; Hull York Medical School, University of Hull; and University of Cambridge, UK). Better End of Life 2021. Dying, death and bereavement during Covid-19. Research report. London (UK): Marie Curie. 2021 April. https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/2021/better-end-of-life-research-report.pdf
O’Donnell, S.B., Bone, A.E., Finucane, A.M., McAleese, J., Higginson, I.J., Barclay, S., Sleeman K.E. & Murtagh, F.E.M. (2021). Changes in mortality patterns and place of death during the COVID-19 pandemic: a descriptive analysis of mortality data across four nations. Palliative medicine 35 (10), 1975-1984. https://journals.sagepub.com/doi/pdf/10.1177/02692163211040981
Our Partners
University of Cambridge
Hull York Medical School (University of Hull)
Principal Investigator
Katherine Sleeman
Laing Galazka Chair in Palliative Care, Honorary Consultant in Palliative Medicine
Investigator
Irene Higginson
Executive Dean, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care
Affiliations
Funding
Funding Body: Marie Curie
Amount: £620,953.86
Period: January 2021 - December 2023